Living with MDS (Myelodyplastic Syndromes)

@loribmt It's kind of hard to really describe what I call numb. When my leg feels tender and I rub it, the feeling I get is like a numbness. It's not that I don't have any feeling in my leg, I do. It's just a weird feeling. Yes, my oncologist did review the MRI and had ordered the repeat MRI that showed no change. Maybe I'm just a worry wort. I had my blood test this morning and am waiting for the results to see if I need my injection on Thursday. It is so nice to have someone who understands some of what I'm experiencing, and someone I can feel at ease talking with. Thank you. It means a lot.

Good morning, @grandmatoni I think being a worry-wort is such a human trait! Well, except for cats who think they’ll start to death at 3AM when their bowl is only half full of food yet. LOL.
If your oncologist has reviewed the MRIs, both the original and then subsequent imaging, with no discernible changes then I think you can relax about this being something to lose sleep over. It would be different if these areas on the MRI had enlarged. Whether or not this is correlating with the odd sensation in your leg may just remain a mystery. Does your leg develop this feeling after certain activities?

I know how things like that can eat at us and our brain loves to think the worst. I’m 72 and I swear every day there is some new ‘thing’ that reveals itself. 😅 But I’ve learned over my medical odyssey the past 7 years to not focus on ‘what if’ because most of the time there is nothing amiss! So all the time spent worrying just robbed me of precious time that could be used for doing something productive or enjoyable.
I’d encourage you to adopt that philosophy…IF something happens, THEN you and your doctor will take care of it. But to worry about a ‘what if’ situation only creates stress. It takes practice to refocus but it works! Ha, yes, I am always this perky and annoying. But I’m here if you need to talk. ☺️

Good luck with the blood test today! Maybe you won’t need your injection Thursday. But if you do, I know you realize how amazing it is to have these medications to keep us enjoying life! Hugs.

Thank you, Lori. Yes, I will be getting my injection tomorrow. I think I'll be fine. When I come home from the med. center, my two youngest grandchildren will be at my house waiting for me - their mother, our daughter, will be helping grandpa paint the inside of our garage. My job will be to entertain them for a couple hours before I leave for one of my favorite outings - Young At Heart meeting with my church group (Pot luck lunch, entertainment, and Bingo), Last meeting until September. That is something that empties my mind of everything that is bothering me, I really enjoy those couple of hours. You have really perked me up. Again, thank you.

@grandmatoni You sound like you're very active so that a big plus in your favor. My feet are like your legs, sort of numb. If I stubb a toe I can feel it, or step on a rock, but quite honestly hot and cold water are hard to figure out via my feet. This all happened over the past year or so. I'm a life long worry wort and this has made it worse (not to mention I have another big health issue since last fall). I'm seeing a therapist, and we looked back last week at a lot of the times I went to worst-case scenario, and that worst case never happened. She said a study was done and generally worst case happened only 5% (or less) of the time, so your chances of it ending up "not too bad" or "just fine" are far greater than worst case. When I start worrying now, I try to focus on the not too bad and make a plan for that and move on. So far that's working! Take care, Susan

My husband of 80 was just diagnosed with MDA. He would not know that he had it if it were not for the low WBC and RBC numbers and low iron. He has symptoms of being tired and some nose bleeds. His oncologist is giving him a "wait a see treatment". He rarely gets sick and has never had COVID. I'm wondering if this is the best option for him, reading that others are on medications.
He will have blood tests done once a month to monitor changes. I just want to make sure we are doing what we can and not being passive. He also has chronic kidney disease.
Thanks
Barbara

Hi Barbara @barbeeh51 Each of us has a unique chemistry so ‘one size does not fit all’ when it comes to treatments for blood cancers.
Your husband has been diagnosed with Myelodyplastic syndromes (MDS). This is a group of disorders caused by blood cells that are poorly formed or don't work properly. There are different subtypes of MDS allowing for some people to be in active surveillance as opposed to having to begin treatment immediately. We have members with all types and stages of MDS so what you read in Connect will vary with each member.

Symptoms of being tired and having nose bleeds can go hand in hand with conditions like MDS. But if your husband is in a low risk group and his MDS isn’t aggressive, then his doctor may elect to do nothing for now. Treatments can also come with side effects so it’s a risk vs reward scenario sometimes.
As long as your husband is having regular monthly blood work, his doctors will be able to look for trends in his labs. If they see indications that there is a need for medications then they can always start treatment. But for now, it sounds like your husband is pretty healthy and avoiding illnesses. So that’s very positive. With his RBCs low, causing the anemia that can certainly account for some of his fatigue. If his nosebleeds become more pronounced he should mention those to his doctor. Just to make sure his platelet level is in the normal range.

I was diagnosed with MDS with ringed sideroblasts 6 years ago. I’m 69. My father died from MDS 30 years ago so there’s an unusual inheritance component to my disease. The only treatments available to my dad were transfusions-no drugs on the market at that time. I was monitored the first 2 years, then started EPO injections every couple of weeks. I have since been placed on Aranesp injections every 3 weeks. My hemoglobin averages about 8.5 every 3 weeks and low neutrophils sometimes. Like everyone else, I have much fatigue and the occasional dizziness and brain fog. But I fight nausea and vomiting the entire week after the injections. I have anti nausea meds but I experience side effects from them also. I took a 3 month break from treatment over the holidays. Surprisingly, my hgb counts stayed about the same. A blood transfusion was so much easier on me. I was thinking about talking to my oncologist about stopping treatment again but continue lab work once every month to monitor my blood counts. My insurance denied payment for the drug Reblozyl. Does anyone know if Medicare forces patients to be on a drug routine before they will approve a blood transfusion? I don’t feel the little benefit I get from Aranesp injections is worth being sick a couple weeks every month.

My husband is 65 years old and was diagnosed with MDS over lapping Mylofibrosis. His been feeling tired as his hbc would range from 6.0 to 8.2. He gets a blood transfusion every time hbc goes below 7. We just got the result of his bone marrow biopsy and the blast (leukemia) is now 15%. I just pray that he gets more energy during all of these process. Good luck to all of you who are in the same boat as his.

@teresadodson123 I'm sorry your insurance would not approved payment for Reblozyl. I was on Aranesp for about 5 years and my hemoglobin would run anywhere from 8.5 to 10.5 with fairly regular 3 week injections. About 5 years ago, my doctor told me about Reblozyl (Luspatercept). He said a doctor he attended medical school with was on the test panel for this medicine and he felt it would really help me. Fortunately, Medicare and my insurance approved payment (it is very expensive). Now my hemoglobin runs between 10.4 and 11.6, I get the injections when it is under 11.5. Also, I have no side effects. I realize everyone is different with different tolerances. I have never had to have transfusions, thank God. I'm 83 and I also have a lot of fatigue and occasional dizziness. I don't know what different insurance companies use to decide if certain meds are approved. I hope things get better for you. I am not a medical person. I just wanted to share my experience with you and hope you do not feel alone.

@nbadry
I also was diagnosed with 5q deletion in 2023. I had my first doctor explain that I would not need treatment until my RBC count went below 10. That doctor left the practice and the new doctor is recommending Lenolidamide. My RBC was 10.3 two months ago and just last week it went back up to 11. I have not felt any difficult symptoms. I walk 2 miles and feel some shortness of breath on an incline. Otherwise, I am not fatigued to the point of needing naps or stopping activities. I am reluctant to go on the medication.
I am wondering how you are doing now and if you took the Lenolidamide and whether it helped you? I am 73 years old.